#ASNL AGM Results: I’m On The Board!

So, the Annual General Meeting of the Autism Society of Newfoundland and Labrador was this morning. A few people who read this blog know that I applied to be considered for the self-advocate’s seat on the board. As you can see by the title, I got in.

The other applicant for the self-advocate seat happens to be someone who is in my Social Club, and we were both told that the board and Scott Crocker (the Executive Director of the ASNL) were so pleased that there were two of us showing definite interest, that whoever didn’t get voted in would probably still be co-opted for things. 🙂 I’m personally hoping that the other applicant applies for one of the available “At Large Representative” positions that will come open next year.

Anyway, aside from giving everyone the good news, I want to add a disclaimer to this blog. I’ve already put it in This Blog and Post Index, but I also want it here, just in case people don’t read (or re-read, in some cases) that post.

Disclaimer: The opinions expressed on this blog, unless explicitly stated, are the personal opinions of the blogger only, and do not reflect the opinions of the ASNL Board of Directors.

Thanks!

😉 tagÂûght

Support Request: Canadian Autism Partnership

For fellow Canadians among my readers, including those who have been following my CAPP journey:

I am reaching out to ask for your help in support of the Canadian Autism Partnership (CAP) which recently was denied funding in the 2017 federal budget.  Please take a few minutes to read this email, and 2 minutes to show your support.

CAP brought together top experts in the autism field who were advised by self-advocates, stakeholders and government representatives from 13 provinces and territories, to develop a business plan with a goal to address the complex issues related to autism in Canada.

CAP strives for timely, evidence based efficiencies in the following areas, which reflect the most pressing issues facing Canadians with ASD:

  • Early identification and early intervention
  • Employment
  • Interventions and services to optimize quality of life at all ages
  • Specialized medical care, including access to dental and mental health services
  • Education, including transitions to work, post-secondary education and independent life.

How you can show your support:

  1. Learn more about the CAP project please visit: http://www.capproject.ca/index.php/en/about-capproject/project-objectives
  2. Make your voice heard by signing up to Global Citizen https://www.globalcitizen.org/en/content/mp-standing-ovation-moving-speech-autism/
  3. Use this tweet to show your support of CAP through a clear and non-partisan message which will go directly to the Prime Minister and Health Minister: “.@JustinTrudeau @janephilpott Support CDNs living w/ #Autism Spectrum Disorder, pledge $19M toward the Canadian Autism Partnership. #cdnpoli

There is now a followup post for what you can do if you don’t use/have Twitter: Support Request: CAP – Followup.

Thank you,
🙂 tagÂûght

CBC Radio Interview: Patricia and Steve Silberman!

As mentioned in my post of the Exploring the Spectrum Conference, on Thursday (March 2nd) afternoon, Patricia and Steve Silberman did an interview with CBC Radio’s Mainstreet NS show. It’s now up as a podcast on CBC at http://www.cbc.ca/player/play/892970051734. And trust me, it’s definitely worth taking 15 minutes to listen to it; Patricia and Steve both manage to cover a lot in that time with the interviewer.

Click to listen to the embedded version of the podcast.

ANS: Exploring the Spectrum Conference 2017 – Wow!

So, way back in December, my friend from CAPP, Patricia, told me that Autism Nova Scotia was having a conference March 2nd and 3rd, and she had managed to get Steve Silberman (the author of Neurotribes) as the keynote speaker (he was great, BTW). She also said that they were doing a panel of women autistics, and asked if I would like my name mentioned as a possible panelist. I said “Yes!”. 😉 (Who wouldn’t? Especially given I’m getting more into advocacy.)

Over the next two months various details got ironed out, and I was confirmed as a panelist, and very eager to go.

And I had a really great time.

(Note: Long – it covers a lot over the course of the two days! Also note there are pictures included.)

Read on to find out exactly why I had such a great time!

#CAPP Films: #AutisticAdvocates Speak

So, I didn’t actually post anything about the CAPP meeting in Montreal at the end of October, mostly because it was a quick two days and I got unpleasantly flustered over issues with getting to the airport for my flight home. (I made it, but it wasn’t fun.)

One thing we did in Montreal during out meeting, however, is now public – each of us who were present were filmed doing a quick interview by Spectrum Productions, in order to create a short film about CAPP that could go public.

As of today, those films – the short film put together of all of us, and the individual interviews – are live, and available to the public.

The short film Hear From the Experts contains a selection of the interviews that each of us gave; the individual interviews contain more details and answers. Below is the short film and my interview.

Click here to see the video links and read more about the subject.

Toronto #CAPP Meeting

It’s been a while, I know. Between dealing with the effects of my heat allergy in July and August (yeah, summers in St. John’s are a lot cooler than, say, summers in Toronto, but that doesn’t mean that they don’t get warm), and then catching a nasty cold in the first week of September (I’m still coughing), I haven’t had a lot of energy to spare to be updating.

But the CAPP Advisory Group met in Toronto on Monday, and we had a great time. We were informed of the basic stats of the responses to the Community Round Tables, the surveys, and the written submissions – and I just want to say a large “Thank You!” to all those who responded. The numbers exceeded what our mandate called for, which is wonderful, and provides even more support for the need for a Canadian Autism Partnership.

Read on for more of what’s going on!

#AutisticArt Wanted: Pacific Autism Family Centre #Art4PAFC

All right, my fellow Canadian creative autistics, it’s time to get your artistry flowing!

The Pacific Autism Family Centre located in Richmond, BC are looking to celebrate the diversity and creativity of those with ASD by proudly displaying their artwork in their new building, the Goodlife Fitness Family Autism Hub.

Submissions are open to artists of all ages and abilities and the subject matter and medium are entirely up to the artist. To submit your art, you will need to complete the attached form, include an image of the artwork and email to:  jenna@pacificautismfamily.com.

The submission deadline is August 31, 2016.

— From Autism Canada

PAFC Art Submission Form

[Edit re clarification] One of the main reasons for the “restriction” to Canadians is the (I quote the email) “cross border taxes and shipping costs”, which would be the responsibility of any American/International artists. It’s also a foreign donations issue. So it’s easier all around if it’s only Canadians who participate.

[2nd Edit] However, I have also just been told that if I know of an exceptional artist from outside Canada, they are willing to consider them as well. So take that and the caution regarding the responsibility of paying for shipping and customs, and if you feel you’re good, go ahead! 🙂

🙂 tagÂûght

#ActuallyAutistic #Canadian #CAPP Written Submission

So, I’ve already put up the link to the CAPP survey (reminder: closes July 15th); we also have a written submission form for adult autistics (referred to as “self-advocates” in the documentation). The details are as follows:


We are interested in learning about your views on the importance of a national partnership model in addressing the critical issues facing individuals with autism, their families and those working in the field. We envision CAP bringing together researchers, service providers, and decision-makers in collaboration with people with autism and their families to address the complex issues the autism community faces today.

Specifically, we are looking for your input to the following questions:

  • As a person on the spectrum, what are the big issues that you believe need to be solved?
  • As we design the CAP model, what suggestions do you have for creating a strong national partnership?
  • How do you think CAP could make a difference to you, your family and your community?
  • If you are aware of other collaborative models you think we should explore, please tell us about them.

Once you have composed your responses to these questions, please visit http://www.capproject.ca/index.php/en/written-submission-self-advocates to submit your answers in a fillable PDF.

All information is confidential. The information we collect will provide us with an understanding of the current autism landscape in Canada and what is required to have a successful national partnership model in this country.

If you have additional comments, questions, or information that you would like to share with us, please send them to casdacapproject@gmail.com.

The deadline for fillable PDF submissions is Saturday, July 30th.


Please, please, if you’re an autistic Canadian, please fill this out. We’ve got a large number of responses to the survey so far, but only approximately 4% of them are from actual autistics. The more information we get from autistics, the better our idea of what the situations around Canada are.

Thank you!

🙂 tagÂûght

Autism is a Delay, Not a Stop

So, the ASNL this semester (spring) has arranged for a yoga for autistics… practice? workshop? whatever…. Four weeks, Sunday mornings. There are a total of five of us there, and like in Social Club, I’m the oldest (although with yoga, our instructor is older than I am). And during this morning’s session (our third), I noticed something interesting.

One of the others there, who is less than half my age… is a lot like I was when I was her age. A lot like I was, at least in social elements (well, from what I’ve been able to tell during the three hours I’ve spent with her so far). Things get blurted out when she thinks of them, no matter how “inappropriate” it may be at the time. She shares details with near strangers that you might think more appropriate to just share with friends. (I mentioned those two items to Mom, and she was nodding and going, “Oh, yes, I remember you being like that”….)

And there is no better way that I can think of to know that I have changed, than to realize that there’s someone else who is like I was, and am not (at least partly) anymore. (I have more restraint about blurting things out, and a bit more restraint about sharing things… although not as much of the latter, witness the very existence of this blog!)

It’s also proof, in living colour, of the “Autism is a Delay, Not a Stop” matter. I’ve changed. I have more awareness now of social appropriateness. I have more impulse control. But I used to be just like her.

We grow, and learn, and change. We just do it at a different rate than allistics/neurotypicals.

Please, parents, specialists, everyone… remember that. Simply being autistic does not mean that we will always behave/act/react the same way as we do now.

‘Later,

🙂 tagÂûght

Signal Boosting: Vaccines Don’t Cause Autism, But That’s Not the Point

I just read this post on Caffeinated Autistic‘s blog, about an article in The Scientific Parent called “Vaccines Don’t Cause Autism, But That’s Not the Point“. It was a very moving post, and led me to read the article. Like Caffeinated Autistic, I’m going to quote some of the article here, because I really do think that this deserves to be signal boosted.

Read on for details, and my comments

#AutismAcceptance Day

April 2nd. WAAD. Officially World Autism Awareness Day, though I can’t think of an autistic I know who doesn’t feel it should be World Autism Acceptance Day.

This was going to be a very short post, because today I did most of my “getting my point across” on Twitter. But then I decided to look at this a different way – what have I done over the past year to contribute to Autism Acceptance?

Because for once, I can answer that I’ve done more than maintain my blog.

Last year, I wrote a letter to the ASNL about Light It Up Blue (which the ASNL continued this year, unfortunately) – it’s also been passed out to Autism Canada’s leadership.

Since then, I have also joined both Autism Canada’s ASD Advisory Board, and the Canadian Autism Partnership Project ASD Advisory Board. I have been part of discussions about creating conferences specifically for autistics in Canada, and about building a Canadian Autism Partnership. I’ve made friends with more autistics throughout Canada by this – really good friends at that. And those have helped me gain the confidence both in myself and my views of being autistic to speak out even more.

I have also started work on the project that my Social Club group is calling Spectrum Storybooks. It’s going to be a long-term project, but will be so useful. Something like that is needed, and we’re going to help fulfill that need.

So I don’t know about the world as a whole – there’s still a lot of things wrong with the public view of autism – but I’ve done things this past year that I can be proud of. And that? That’s something worth celebrating.

Deep Pressure Needed!

So, it’s around midnight here, and for the last half hour I’ve had both my weighted lap pillow and my laptop on my lap. My legs feel like they’re going to jump out of my skin – not sure what the best comparison is, maybe like little jolts of electricity running down the nerves in my legs, only constant rather than intermittent? – because I desperately need deep pressure.

(I’m debating showing up at my parents’ house tomorrow with my lap pillow and grabbing Mew – who is the biggest and heaviest of the cats we have between us – and forcing him to stay on my lap for more than twenty minutes at a time.)

Read on for more about deep pressure with respect to me, and a bit in general

Recommendation: Ten Things Every Child With Autism Wishes You Knew

Ellen Notbohm, the mother of two children, one of whom is on the spectrum, has a number of books out about children on the spectrum, acting as the voice for her son. One of them, Ten Things Every Child With Autism Wishes You Knew, is now in the ASNL Barbara Hopkins Library. As I was early to Social Club today, I noticed it and decided to read it to see whether I agreed with what was in the book.

My personal answer? It’s excellent. There are some minor things that I disagree with (noted below), but the vast majority of it (and every one of the “Ten Things”) involves points that I am in full agreement with. It’s also both well-written and quite respectful of autistics. (Including the fact that although she uses “child with autism” throughout, she both explains why she prefers not to use the term “autistic”, and also that a number of children, when they grow up, prefer to be referred to as “autistic” rather than “adult with autism”.)

Click for my specific thoughts

BBC Video Article: Cat Helps 6 Year Old Autistic

Link

My dad follows the BBC for the quality of their reporting, and sometimes finds interesting tidbits on there. This was one of them. Very positive message here. You go, Iris and Thula!

How a cat enabled an autistic six-year-old to communicate

Turns out there’s also an article on CNN about Iris and Thula, which goes into greater detail about Iris’s accomplishments as an artist.

Portrait of a 6-year-old artist with autism and her therapy cat

Thanks to Autism Canada for that link!

🙂 tagÂûght

Let’s Talk About: Storybooks – Face-blindness vs. Bullies

And now that I’m back in St. John’s, I’m resuming the talk about storybooks! Specifically, this post is to look at the issue of face-blindness and bullying.

While I was in the CAPP meeting a week and a half ago, I brought this topic up over lunch, and got some great suggestions for how people who are face-blind can deal with “recognizing/identifying” bullies. I’m going to list them here. If anyone has other possibilities, ideas, suggestions, solutions, please let me know – I’d really like these Spectrum Storybooks to be as comprehensive as possible.

Continue reading

I’ll Be Back Again

I’m currently sitting at my gate in Halifax Robert Stanfield International Airport. It’s been a really, really good trip; great and Âû-some all at once.

Remember I mentioned that friend of my sister’s who has an autistic son? We went over to their place for dinner, before I was dropped off at the airport. And I got so many wonderful hugs – everyone was staring! He was hugely affectionate to me. It was great! (I’m told that usually he’s either willing to engage or goes and shuts himself in his room – something that I always used to do, or want to do – and that he was even more engaged with me than my sister has ever seen him. It was au-some!)

It’s really been a wonderful trip. I got to see my niece and nephews, got to spend time with them, with them and my sister, and with my sister alone. But I’m happy to be heading back home as well. I miss my puddy tat, and my parents. (Yes, Mom and Dad, you’re up there in what I miss. It’s not all the cats. 😉 )

Meeting everyone, spending time with people, and the work we’re doing with CAPP – this trip is definitely going in my favourite memories.

About an hour before the flight’s due to leave. Next post will be from St. John’s, as usual.

‘Later, all!

🙂 tagÂûght

Nova Scotia, How I Love Thee

So, I’ve been in Nova Scotia for over a week now. I leave in just over 49 hours (from the time I posted this). And I had a wonderful day yesterday. I figured it was time to discuss.

This will be a somewhat long post, talking a bit about my family and a lot about the main/original reason I’m here, which is to do with the Canadian Autism Partnership Project. No details of our discussions – those are confidential – but just how it went, and how the group related to each other, and various bits and pieces.

Read on….

Two Wonderful Sisters

I’m the oldest of four siblings (the only autistic thereof, as it happens). Two sisters – and a brother (who has given me a sister-in-law and my two younger nieces) but this post isn’t about him. (Sorry, Bruder mein!) This is about my sisters, and how wonderful they are.

But first… one issue that I’ve faced through most of my adult life, though it’s not one I talk about to many people, is that except in very rare cases – for me, Out Of Sight does indeed mean Out Of Mind. This has even included my siblings… partly because of my childhood experiences with the communications chasm that can occur between autistics and allistics, and partly because, well, I’m often not the best communicator unless it’s about something of immediate importance to me. (Not to say that my family and friends aren’t important, but if they’re not right at the forefront of my mind, I can go weeks without thinking to contact them.)

Read On for why my sisters are wonderful people and sisters….

Leaving, on a Jet Plane

(Except I know exactly when I’ll be coming back. 😉 )

So, back in November/December, I applied to be a member of Autism Canada’s ASD Advisory Board. On my application, I filled in that I was interested both in being part of the planning for a conference specifically for autistic adults (AKA a Canadian version of Autreat), and as a stakeholder in discussions, polls, surveys, etc. The latter has gotten me involved in CASDA (Canadian Autism Spectrum Disorders Alliance) as a stakeholder for the Canadian Autism Partnership Project (CAPP), a Federal initiative whose goal is to: “address key issues such as information sharing and research, early detection, diagnosis and treatment, and supporting families” (quote from Canadian Autism Partnership: Canada’s Economic Action Plan).

The first face-to-face meeting of stakeholders is going to be in Halifax next week. (I’m rather looking forward to it.)

And even more, because my sister and my oldest niece and my nephews all live in a suburb of Halifax, so I’m going to be spending some time with them as well.

For more about my plans, continue reading

Let’s Talk About: Storybooks! Post #1

So, here’s the thing. When I was at Social Club this afternoon, our facilitator mentioned that she’d been looking in the ASNL Library for resources – storybooks – to help some parents explain certain things to their children. Unfortunately, she wasn’t too happy with what she found – some she liked the wording but not the illustrations, some she liked the illustrations but not the wording, and some were “yuck”.

Because we’re a pretty creative group, she came up with the idea that maybe we could go ahead and write (and illustrate) some of these missing resources. We all loved the idea. So, one of the first things we have to do is research – and I’m turning to you. Autistic adults – what (of the subjects listed below) would you have wanted to read to help you as a kid? Autistic teens, what about you? Parents, can you ask your kids? Do you have any suggestions for wording? Are there any other subjects you think would be helpful? And if we’re satisfied with what we produce… would you like us to publish them?

Read on for details!

Guest Post: My Sister

My middle sister put up a post on Facebook last night about her visit (with her children) this summer, and my reactions. I asked her (a few minutes ago as I’m writing this) if I could post it here, and she said “Sure!” I thought it might be nice to pass on how she has seen some things. 🙂 Included are the pictures she used to show this.

Click to read the post

Recommendation: Hamilton FeminAuts’ Resources

So, I’ve been poking around the Autism Canada forums, and one of the members there has a link to a group called Hamilton feminauts. To quote from the About Us portion of their website:

FeminAuts was founded as a safe, inclusive, and accessible meeting space for women and female identified individuals on the Autism spectrum to meet likeminded individuals and learn valuable skills such as self esteem building, sensory self regulation, and adaptive and social skills.

http://hamiltonfeminauts.weebly.com/about-us.html

I went there to poke around as well, and I would say that their resource page definitely warrants a recommendation! So: Resources – Hamilton feminauts. They’ve got a bunch of useful free phone apps, for both executive dysfunction and communication; links to various resource sites (including the ASAN welcome packet and the Geneva Centre); online diagnostics and test resources; inventories and social stories (including ones related to sexuality); and usual open source therapies and courses links.

Yep, high on the recommended resources list!

Note that I’ve also included a link in my links page.

🙂 tagÂûght

Autism Canada

So, the website for Autism Canada has just gone live: autismcanada.org. I’ve been poking around, and so far it looks fairly good. I have, however, felt the need to send them a copy of my letter about Light It Up Blue, since that’s one of the National Awareness campaigns they have listed. I have also joined their forum under the username tagÂûght (just waiting for official approval), so anyone else who wants to join is welcome to discuss this blog with me. 🙂

Still poking around, but note that they do have the DSM-5 criteria listed, including the severity criteria (3 levels – I’d say I’m either level 1 or 2 in communication, and level 1 in “restricted” interests, although my sensory issues might push me up to level 2 in that as well).

They also have a directory, called Autism Junction, at autismjunction.ca, which has a wide variety of service providers for autistics, both child and adult. It’s not complete, but is still under construction; there’s a form to fill out for any service providers who aren’t listed already. (I’ve sent an email to two that I know of, advising them of this.)

Going to be seeing if there’s any way that I can include blogs in the list of resources, and let them know about my blog. 🙂

[Edit] Under “About Autism”, they have a good listing of co-morbid diagnoses, and what may indicate one (I’m going to check out the PDF they include for further details). However, the “Evolution of Autism” page is not about how autism can evolve throughout a person’s life, it’s about the recognition of autism since Leo Kanner first identified it. Honestly? I think details about how it can change throughout a person’s life would be more useful. [/end edit]

‘Later, all!

🙂 tagÂûght

Autism, Depression, and the Difference

I was just (less than an hour ago, as I write this) reading the most recent post Unstrange Mind put up on her blog, entitled I have a depressing, socially-isolating disease. In it she explains about how celiac and Non-24 (see her post for details) affect her in ways that are depressing, socially isolating, and very much not good for her overall health; in contrast to autism, which is not something isolated from her “self” and has a number of things about it which make her happy.

That post got me thinking, and it reminded me of a question that I think I remember my father asking me at one point, about the effects of autism vs. the effects of depression, and why I considered them to be different (the context being about how “curing” autism would make me a completely different person). I think I now have an answer.

To read my thoughts, go on.

[tagÂûght] Acceptance, Love, and Self-care: #AutismPositivity2015

It’s early morning April 30th as I’m starting to write this post, which is highly ironic, as I should be sleeping right now. Unfortunately, houses in St. John’s don’t seem to have soundproofing, and the housemate whose bedroom is next to mine is talking on the phone.

But aside from that, this topic is more than just a positive one, it’s a pertinent one for me this year. (And likely to be a long post, with many examples.)

Read on for the actual positivity!

ASNL Chapters Fundraiser Update

Aside

So, I finally have (and am putting up) the results of the ASNL fundraising promotion at Chapters on April 1st.

Together, Chapters and the Autism Society of Newfoundland and Labrador managed to raise $206.19 (Cdn) for the ASNL Library fund. Yay! And Chapters is also interested in doing more with the ASNL – Double Yay!

So, thanks to everyone who came out and contributed by buying books during that period; it helps a lot.

🙂 tagÂûght

Open Letter to ASNL: About LIUB

The following is a letter that I will be sending to the Board of Directors of the Autism Society of Newfoundland and Labrador concerning the “Light It Up Blue” campaign. At the bottom of the post is a link to the PDF version.


Dear Mr. Crocker and Members of the Board,

Once again this April, St. John’s/Newfoundland has tried to demonstrate and/or encourage “autism awareness” (or “autism acceptance”, as most autistics prefer) by “Lighting It Up Blue” on Cabot Tower and the Confederation Buildings. And I really have to protest.

Continue to read letter

Let’s Talk About: The Meanings of “Obsession”

So, at Social Club (at the Autism Society for NL; it’s basically a small group getting together for social activities – playing games, doing art, etc.) this past weekend, we had a new person there. And that person mentioned that xe was obsessed with one particular topic (I can no longer remember what it was, that wasn’t the important thing), “like with OCD” (obsessive-compulsive disorder).

On my post about Hyper-Focus vs. Lack of Focus, Unstrange Mind called me on using the term “special interest” for interests that we have and like to focus on – a term that I used to replace the term “obsession”, which tends to carry a negative connotation. She suggested using the term “passion”, which I thought was a very good idea, and have since cleaned up my vocabulary that way. 🙂

Anyway, getting back to the topic of the post, I was rather disturbed by the way that person was using the term “obsession” to define a particular area of interest, because at one point, my mother suggested I might be OCD, and I asked my psychologist about the matter. And what he said was something of an eye-opener.

Read on for more details….

Recommendation: G is for Giraffe by Unstrange Mind

And it’s another recommendation of a post from Unstrange Mind’s A-to-Z April Blogging Challenge, this one “G is for Giraffe“.

What do giraffes have to do with autism, you ask? It’s all about symbols and symbolism. The majority of the Autistic community do not care for the puzzle piece symbolism, for fairly clear reasons – there’s nothing about us that’s missing, for one thing – and it was a symbol created by allistics, not autistics. We need our own symbols.

And that’s what Unstrange Mind’s post for today is about – what are the autistic-created symbols for autism? Read, and find out!

🙂 tagAught Âû

StimTastic: First Look

So, another April post. This one also about things near and dear to our hearts – stimming. (No, it’s not the post I’ve been promising for two years now. Sorry. That one’s still going to take some time to do.) No, this one is a first look at Musings of an Aspie’s company, StimTastic.

Note that I say “first look” because I haven’t yet received any of their products. However, hopefully next month after my birthday I’ll be able to provide some specific product reviews…. 😉 (Yes, some stuff from StimTastic is first on my birthday list.)

Read on!